Been a long time since I was on here!

10 days isn't very long. I know it sucks to wait and be sick, but you need to give it time. It took 9 weeks before I had no symptoms on Xeljanz. I did see improvements before then, but it was 9 weeks before I felt normal.

You say: "wish it was an injection or infusion so it would work faster." Those meds don't work faster, not at all... Rinvoq and Xeljanz are two of the fastest acting meds we have. They don't work super fast for everyone though, but a lot of people see results in 3 days to 2 weeks.

I don’t know how long rinovaq will take to work but it was a good 3-6 months for Entyvio to start working for me. It was probably 1-2 years before I was in remission, definitely slow and frustrating.

I’m also about to start rinovaq since Entyvio stopped working, hopefully it works much faster and hopefully it starts working for you soon.

You have been tested for c diff again? I was so afraid of getting the second shot and while the fever wasn’t bad I did flare mildly out of a solid remission. Luckily I got it under control. I wouldn’t get the second vaccine

Hi Joanna,

I'm so sorry that you are going through such a tough time. It sounds hellish.
Is it possible that, as you pointed out, you are not absorbing the Rinvoq because of how fast your transit time is atm?
Maybe mention it to the nurse and see what she suggests.
May be worth getting checked for Cdiff too, as countess mentioned.
Also, maybe try some Hydralite just to keep you going. I know it sounds obvious but worth mentioning.
Sending lots of prayers your way xx

OMG!!! Joanna! I can't believe how bad it has gotten. I'm sorry you needed to go to hospital, but I am glad you are there. I hope your GI can figure out what is going on, if it is not all due to the flare. Did you tell him how much worse you got from the Shingrix shot??

Oh no! Are you still in the hospital or are you home again? Fingers crossed they find something in all those tests and can treat it quickly.

Thanks guys. Still in immense pain so not sleeping whatsoever. I went home from the hospital since they can’t really do anything right now besides fluids. It was just a neighborhood hospital close to my house with no knowledge of IBD unfortunately. My GI is at a university hospital about an hour away and I did not have it in me to make the trip. I talked to my nurse yesterday and the plan is to wait for the stool tests (should all come in by Monday) and then if something is positive, treat it. If negative, come in for an emergency colonoscopy next week. Also, I am absolutely not allowed to get Shingrix again per my nurse’s orders. I am hoping its an infection so we can treat it with something but it sucks if its just my flare and my meds arent working at all. I assume we will scrap rinvoq and go with an infusion/injection so it works faster. My ct scan looked like crap which is no surprise considering how much pain I am in. She did say a lot of their patients do at home infusions now so I would get a picc line and do it that way. Just can’t wait to not be in pain and get some sleep again. My eyes and head hurt all the time. I cant even look at the sunlight without seeing stars. Idk how I went through my last flare. It was Sept 2010-May 2014. If I can get through that alive and still have my colon, I know I can get through this. I am glad I gained 45 lbs from my last flare or else I would be so screwed right now. Just sucks that I did all this work to reverse my osteoporosis and now this happens.

Maybe you should make that hour trek to the hospital. At least they could keep you hydrated. And they should be able to get your colonoscopy done sooner. I just don’t see how you can continue on this way even for a few days without any meds at all. IMO!

Been at the university ER since 7 pm last night and it’s 11:30 am. Still in the ER and they have no beds available at the hospital. They said I could be in the ER for 4 days since 30 other people still need beds. I have never had such a bad ER experience and they will only give me tylenol for the pain. This place has gone downhill. I’d be happier in a North Korean prison. I haven’t slept at all since the hospital lights are super bright. I may just go home since I would be more comfortable suffering there.

We have called my nurse and GI several times and nobody can pull strings. This is just so unacceptable. They said to come in last night and I would be admitted but they didn’t say it would take days. People are all lined up along the hallways in wheelchairs and stretchers. I didn’t even bring my weed to take some of the pain away. I hope I don’t get some illness being around all these people coughing constantly.

I asked the nurse and doctor and they said about 30 nurses quit upstairs so they are hugely understaffed and had to shut down a whole unit of the hospital. The doctor said there was a UC patient in the hallway flaring for 3.5 days and screaming the entire time. Like wth is this kind of medical care? I had to poop in a trash can! The conditions here are really bad. The nurse said everything went to crap after covid. They said maybe Tuesday I could get a bed since the list is now up to 42 patients who need admitted. I asked to be discharged. He gave me a 60 mg dose of IV pred and pred to take home. Just a horrible experience. I cant wait around all these people and have no access to a single bathroom (shared amongst the ER).

Damn. That’s crazy! I’m out of words.